"I Felt Like I Mattered": Caring is a key ingredient of collaborative care for chronic illness.

Objectives: To identify perceptions and experiences related to caring science and collaborative care in intervention participants of the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) study, a randomized, multi-site clinical trial for patients with chronic heart failure and reduced health status.

Methods: Forty-five participants completed semi-structured, telephone interviews with a focus on intervention components, impact of the intervention on participants' lives, and recommendations for intervention change. Data were analyzed using an inductive content analysis approach focusing on the presence and frequency of text to identify patterns, categories, and themes across participants without an a priori code book.

"": A Qualitative Study of Patient Perceptions of a Primary Palliative Care Intervention.

Primary palliative care is needed to meet the complex needs of patients with serious illness and their families. However, patient perceptions of primary palliative care are not well understood and can inform subsequent primary palliative care interventions and implementation. Elicit the patient perspective on a primary palliative care intervention, Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA), from patient perspectives.

Home Oxygen Therapy for Adults with Chronic Lung Disease. An Official American Thoracic Society Clinical Practice Guideline.

Evidence-based guidelines are needed for effective delivery of home oxygen therapy to appropriate patients with chronic obstructive pulmonary disease (COPD) and interstitial lung disease (ILD). The multidisciplinary panel created six research questions using a modified Delphi approach. A systematic review of the literature was completed, and the Grading of Recommendations Assessment, Development and Evaluation approach was used to formulate clinical recommendations.

Essential Components of an Interstitial Lung Disease Clinic: Results From a Delphi Survey and Patient Focus Group Analysis.

Background: Management of patients with interstitial lung disease (ILD) requires subspecialized, comprehensive, multidisciplinary care. The Pulmonary Fibrosis Foundation established the Care Center Network (CCN) in 2013 with identified criteria to become a designated CCN site. Despite these criteria, the essential components of an ILD clinic remain unknown.

Idiopathic pulmonary fibrosis: Educational needs of health-care providers, patients, and caregivers.

Idiopathic pulmonary fibrosis (IPF) is a progressive disease associated with poor quality of life. Debilitating symptoms and the reality of shortened survival impact patients' physical and emotional well-being and constrain the lives of patients' caregivers. This study assessed the informational needs of medical providers who care for patients with IPF, IPF patients themselves, and their caregivers.

Advancing Symptom Alleviation with Palliative Treatment (ADAPT) trial to improve quality of life: a study protocol for a randomized clinical trial.

Background: People living with chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD), and interstitial lung disease (ILD) suffer impaired quality of life due to burdensome symptoms and depression. The Advancing Symptom Alleviation with Palliative Treatment (ADAPT) trial aims to determine the effect of a multidisciplinary, team-based intervention on quality of life in people with these common diseases.

Methods/design: The ADAPT trial is a two-site, patient-level randomized clinical trial that examines the effectiveness of the ADAPT intervention compared to usual care on patient-reported quality of life at 6 months in veterans with CHF, COPD or ILD with poor quality of life and increased risk for hospitalization or death.

Interstitial Pneumonia with Autoimmune Features.

Interstitial pneumonia with autoimmune features (IPAF) is a research classification proposed by the European Respiratory Society/American Thoracic Society Task Force on Undifferentiated Forms of Connective Tissue Disease-associated Interstitial Lung Disease as an initial step to uniformly define, identify, and study patients with interstitial lung disease (ILD) who have features of autoimmunity, yet fall short of a characterizable connective tissue disease. Since its publication in July 2015, there has been substantial interest in IPAF. Centers from around the world have published their findings of retrospectively identified cohorts of patients who fulfill IPAF criteria, suggestions for modification of the criteria have been offered, and patients who fulfill IPAF criteria are being included as a subset in the ongoing phase II multicenter unclassifiable ILD treatment trial with pirfenidone.

Impact of novel antifibrotic therapy on patient outcomes in idiopathic pulmonary fibrosis: patient selection and perspectives.

Patients with idiopathic pulmonary fibrosis, an incurable, progressive fibrotic interstitial lung disease, suffer an impaired quality of life due to symptoms, resultant functional limitations, and the constraints of supplemental oxygen. Two antifibrotic medications, nintedanib and pirfenidone, are approved for the treatment of idiopathic pulmonary fibrosis. Both medications slow the rate of decline of lung function, but their effect on patient-reported outcomes is not yet fully understood.

The impact of carrying supplemental oxygen on exercise capacity and dyspnea in patients with interstitial lung disease.

Background: May patients with interstitial lung disease (ILD) require supplementary oxygen (O) therapy to maintain normoxia. However, ambulatory O delivery devices are constraining and cumbersome. The physiologic and symptomatic impact of these devices on ILD patients is unknown.

Understanding the informational needs of patients with IPF and their caregivers: 'You get diagnosed, and you ask this question right away, what does this mean?'.

Background: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients' individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best suited to deal with life-altering conditions like IPF.

Physical activity and activity space in patients with pulmonary fibrosis not prescribed supplemental oxygen.

Background: Patients with pulmonary fibrosis (PF) have impaired quality of life, and research suggests that dyspnea and physical activity are primary drivers. As PF progresses, some patients notice the disease "shrinks their worlds". The objective of this study is to describe movement (both physical activity and activity space) in a cohort of patients with PF of various etiologies who have not been prescribed supplemental oxygen (O).

Tracking dyspnea up to supplemental oxygen prescription among patients with pulmonary fibrosis.

Background: Dyspnea is the hallmark symptom of pulmonary fibrosis. Supplemental oxygen (O) is prescribed to many patients with pulmonary fibrosis in hopes of alleviating dyspnea and improving physical functioning. We used response data from the University of California San Diego Shortness of Breath Questionnaire (UCSD) which was administered monthly in the context of a longitudinal, observational study to plot a rich trajectory for dyspnea over time in patients with pulmonary fibrosis.

Looking ahead and behind at supplemental oxygen: A qualitative study of patients with pulmonary fibrosis.

Rationale: Supplemental oxygen is prescribed to patients with pulmonary fibrosis to normalize oxygen saturations, decrease symptoms and improve quality of life. Along with potential benefits, patients face challenges as they incorporate oxygen into their lives.

Objective: Our aim was to better understand the perceptions and experiences of patients with pulmonary fibrosis as they confronted the possibility and realities of using supplemental oxygen.

Informal caregivers experience of supplemental oxygen in pulmonary fibrosis.

Background: Patients prescribed supplemental oxygen (O) therapy face challenges as they adjust to being constantly "tethered" to an oxygen delivery device. Informal caregivers (ICs) of patients with pulmonary fibrosis (PF) face their own, often overlooked hardships when O is brought into their home and added to their lives. Our aim was to understand the multiple effects of supplemental oxygen therapy on ICs of patients with PF.

A 27-Year-Old Man With Acute Severe Low Back Pain and Bilateral Leg Swelling That Prompted Renting a Wheelchair for Mobility.

A 27-year-old man with OSA, posttraumatic stress disorder, and chronic mechanical back pain presented with a 3-day history of acute atraumatic worsening of his low back pain as well as right groin numbness that was exacerbated by walking. He also complained of bilateral leg "heaviness," pain, and swelling, all becoming so severe that he rented a wheelchair for mobility.

Serial assessment of right ventricular volume and function in surgically palliated hypoplastic left heart syndrome using real-time transthoracic three-dimensional echocardiography.

Background: Right ventricular (RV) failure is a major cause of morbidity and mortality in patients with hypoplastic left heart syndrome (HLHS), but the longitudinal course of RV volumes through staged palliation (SP) has not been previously investigated. The aim of this study was to evaluate RV volume and function longitudinally through SP of HLHS using real-time three-dimensional echocardiography.

Methods: A total of 18 subjects with HLHS were prospectively studied at four time points from diagnosis through stage 2 (SP2).